Claire Cooper from Heathfield East, Sussex

Claire Cooper

Pain was so bad for Claire Cooper that she wished suicide was an option.

After four years of suffering bad stress incontinence mother of two Claire Cooper, 40, had the TVT mesh sling operation in November 2008.

She was told she was a prime candidate to receive a TVTO sling to help support her pelvic floor/bladder. She wasn’t told of the alternative surgical procedures available.

Initially pleased with her results, three years after her operation she had an endometrial ablation using high heat close to her sling and since then has been the victim of a catastrophic chain reaction of events leading to lifelong, life-altering pain.

“On going for the surgery, I was aware that the sling may fail or rarely make my incontinence worse. So, I was overjoyed when my incontinence vanished. I had a few minor side effects, niggling groin pain during sex etc, but other than that I was very pleased.

“Around this same time and through the next few years, I was also being treated for heavy periods and in 2011 it was suggested I had a thermal Endometrial Ablation using the balloon and boiling water method which took place in November 2011.

“A day later my nightmare began. I have never experienced tearing, sickening pain like it, but assumed the pain was just my boiled uterus and it would calm. Weeks went by, and then months, and despite procedure after procedure and subsequent time off from work, I was no better. My groin and pelvic pain was taking a dramatic toll on my life and by the spring of 2012, I began discussing a hysterectomy with my Gynecologist, who wondered if my sporadic Adenoymyosis was causing me this pain.

In October 2012, a friend was on holiday in the states and she called me. All over the press there were bulletins and adverts about the TVTO and their malfunctions. Thousands of women were injured by them and fighting for removal.

On my pre surgery appointment with my gyne, I mentioned this and asked if my sling could be the cause. She told me that she was unaware of any such reports, and especially none in the UK. I was so desperate in pain I believed her. In fact I still believe her, she is a kind and decent lady and really did not know.

My hysterectomy took place on the 24th Jan 2013 and it was a total abdominal type, taking my cervix too. After a few weeks post op, it was clear I was in more pain than ever and I became desperate.

I visited my GP many times and on one final occasion was told “this has to stop Claire, there is nothing in there, it’s all been out on the operating table for them to see. You are depressed” I was so utterly embarrassed even began to question myself. I know others questioned me too. Added to this, my Gynecologist suggested she could do no more for me and I was referred to pain management. I felt alone and given up on.

I left employment in Jan 2014. I could barely stand upright and began having symptoms of Fibromyalgia and recurrent urine and tooth infections too. I’d gone from walking the dog an hour a day on top of a physical job, to not being able to walk 50ft. I was reliant on heavy opioids just to function. I thought I wouldn’t make the summer and wished honestly that suicide was an option.

I felt my life was over. One of those first days at home, I was listening to Radio 4′ woman’s hour and there was a feature on the TVTO implants and the main speaker was Dr Sohier Elneil from University College London Hospital, a consultant urogynecologist. I contacted Dr Elneil and she agreed to see me quickly. Very quickly, she diagnosed a very damaged tape, and explained why.

They are often positioned incorrectly, they move, and because they are made of polypropylene plastic, they shrink with heat. And of course, I’d had the thermal ablation…very close to it.

On the 19th May, I was admitted for partial removal surgery. This is done using a five inch u shape incision through the vagina. Once inside, it was found that the mesh had indeed shrunk to a stiff cheese wire and sliced through muscle, nerves and tissues before embedding itself into my urethra.

To get the molten mesh out Dr Elneil had to pull apart my urethra and try and rebuild it from what was left.

Consequently, I spent from May 2014 until March 2015 practically incontinent of urine. I relied on deliveries of incontinence pads from the NHS, my radar key and a little card which asked shop keepers to let me use their toilets.

I then embarked on a series of degrading tests to see what was working and what wasn’t, and the wait for my tissue to heal enough to have repair surgery to my pelvic floor and remove the remaining parts of the TVT. I am now recovering from that surgery and thankfully back in employment within the NHS but not as a Health Care Assistant, the job I so loved.

My agony remains the same, so I spend my days avoiding all activity; household chores, dog walking, shopping, they all trigger the pain. I literally go to work and sit and come home and sit some more.

I use my wages to pay others to help me manage my home. I was deemed not eligible for Personal Independence Payment, nor ESA, nor a Blue Badge. I try not to think too much about the injustice of it all. I’m not sure if it has been “just” the TVT or a contraindication with the ablation that caused the TVT to erode so quickly, but either way, I am maimed, pained and am half the women I once was.

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4 thoughts on “Claire Cooper from Heathfield East, Sussex

  1. Hi.im really sorry for your pain and the horrible time yv had, so I thought I’d reply… Iv had one a few years ago and have to say yes it did work but now I have gone from peeing when laughing and running etc to when I need to go I have too… I went back to the hospital when this started but he just said oh you might of had that before, I explained I hadn’t but just got rushed away… so I live with that now.. I also find it feels uncomfortable down there and sore/ painful at times when having sex. I have to say I decided just to keep quite , there are other little things that have changed too but I just deal with it day by day..

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  2. Dear Claire I cannot believe what you have and are going through, can you not sue,there surely must be a lawyers out there no win no pay for your kind of case, I just find it unbelievable what you have had to suffer and are still suffering so much, my heart goes out to you, I wish you a full recovery and a pain free life Pat xxx

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    1. Thank you for your kind words Pat. I have gone a little down the litigation route but the so called independent Dr who looked at my case on behalf of my solicitor, said that the Drs had acted with their best knowledge and I had been “unfortunate! (She is pro mesh) the only thing I can do is go for Product Liability with Johnson & Johnson subsidiary Ethicon, and lawyers in the UK will not take on a giant like them unless many women come together and they can try it as a whole. Group Class Action. So until enough women come forward, none of us can sue so it seems. In the US, women are winning $7-100million per person! In the UK we may get £50k
      We are also at the brunt of huge welfare cuts here and have an “unrecognised” condition, or several conditions. Getting ANY DISABILITY is nigh on impossible. I had a completely open bladder neck for 11 months, no control at all whike standing, on top of the pain and auto immune condition but was deemed too well to be eligible for £50 a week because I could manage my own medication and change my own pads. Their exact words!!!
      I wish for someone one day to claim accountability for our traumas….but most of all for the NHS to stop using these tapes in women. That was my reason for sharing my story, it must be stopped!
      Thank u Pat xx

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      1. Hi Claire,

        I too am from East Sussex and quite local to you. I had TVT insertion last year and have to say that of all my previous surgeries, including abdominal hysterectomy, this was by far the most painful. So much so, I couldn’t get up off the sofa to get to my bed so post surgery I spent 2 days and nights restricted to the sofa as movement was beyond painful.
        I suffered extreme hip pain which was very debilitating and after complaining of this I was told it was the position I was in in theatre (modified lithotomy). As a health care assistant from theatres at the time, I knew this to be false, but was left with no alternative but to take pain relief.
        I wasn’t given enough information regarding this operation and I so wish I had done my research before agreeing, as a student nurse, I now understand the importance of questioning. I believed that this was the best option based on the advice of my gynae consultant. Having now found out it is made from plastic I am very concerned.
        I get occasional pain when rolling over in bed as I can feel the mesh pulling which means I roll over carefully and have had occasional post coital bleeding. My only option was to be readmitted to theatre for investigation but after copious amounts of surgery, I am done.

        Reading your piece in the Express was such a relief to know that I was not alone in this, and if there is anything I can do (as we are local) please do contact me. From one woman to another, I feel your pain x

        Clare

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